I had one hell of a rumble.
I had to beat Tarzan’s behind first,
For claiming to be King of the Jungle.
For this fight, I’ve wrestled with alligators,
I’ve tussled with a whale.
I done handcuffed lightning
And throw thunder in jail.
You know I’m bad.
just last week, I murdered a rock,
Injured a stone, Hospitalized a brick.
I’m so mean, I make medicine sick.
I’m so fast, man,
I can run through a hurricane and don't get wet.
When George Foreman meets me,
He’ll pay his debt.
I can drown the drink of water, and kill a dead tree.
Wait till you see Muhammad Ali"
I came across that quote today and couldn't describe the attitude I need to have right now better than that. The last 3 weeks have been pure hell, with the last few days being especially excruciating. I have fungal pneumonia, some bacterial infection and now severe Graft Vs. Host Disease (GVHD). The pneumonia has been producing a nasty cough pretty much all day and night, pushing up phlegm into my already cut and torn up mouth. I'm basically not producing any saliva of my own, because the medicines I'm on that completely dry you out and the re's GVHD in my mouth. Sometimes it hurts to even drink water with all the cuts and ulcers in my mouth, let alone eat. Whatever I do eat, I throw up because of the cough. I weigh only 100 lbs. and can no longer walk more than about 200 feet. My Mom takes me to and from the hospital in a wheelchair - 3 weeks ago I could easily walk to and from.
Most of my day is spent in the hospital, because I'm on some serious IV medications and a ton of pills. A lot of them are to be taken at different times of the day so it's mentally exhausting having to keep track of all the times, because my appointment times vary so that throws off my whole schedule. Some have to be taken on an empty stomach, some with food...it's just so very complicated. This is what you have to do when you have 3 problems going on at once. I think the pneumonia should be getting better soon though with the intense medicine they put me on. The first day I took it, I turned off the lights to go to bed and saw this dim light flashing constantly. I thought I was gonna have a seizure and felt so dizzy. It also causes mild hallucinations every night, which is pretty interesting. Thankfully the flashing lights are not that apparent, but the dizziness still continues. My vision is getting so blurry, I have to wear glasses everywhere.
This degree of gvhd doesnt happen to most people...it was not supposed to happen to me with such a great match...only about 30% of people get gvhd at all. I'm on two strong steroids and this pro-graft medicine that's expected to stop this and turn things around, but it's taking a while...my liver was finally healing from the previous complications, but it got about 7-8 times worse in the last couple weeks. I still can't taste ANYTHING, I could be eating grass and I wouldn't know the difference. I basically force myself to shove food down my throat, because the steroids make me so hungry.
There's not much the doctors can do other than just wait for it to pass. Between the last problem and this, I had about 4-5 days where I could eat and taste things almost normally...it made a huge difference. This has taken away all of my strength, I've never felt this weak before. My hands shake all the time, I drop everything. I lost 10 lbs. all because of this. I was afraid I'm not gonna make it through my bday, but I just have to hope this is the last big issue and after this I can go home. I've been here so long, I forgot what it's like to go outside and feel the air. In the meantime, I just need to keep eating and move as much as possible. This is the hardest I have ever to push, but if that's what it takes, I have no choice...I have to wake up and go to the hospital and just dream of being done with this.
Oh the worst problem is that gvhd completely kills the skin on your body. It's all peeling off now and couldn't be a bigger mess. The entire layer of skin on my legs, arms, hands and feet is coming off. Apparently, a new layer will grow, but again who knows how long...
This is where I've been, this is my life. But I'm pushing til my last breath. Three months and counting...
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